Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Thursday, September 06, 2007



The First Week of School...

Tuesday was a "meet and greet" day for Kindergarteners at school. So we had our time slot and went with a few other students to meet Rebekah's teacher. She found her chair and her cubby where she can put her backpack, lunch bag and coat. Her cubby not only has her name but a squirrel as well. She got to put her school supplies away (into the bins with all the other kids' supplies) and got to listen to a story and color/glue a picture. Dad and Mom had already met her teacher in the spring at our IEP meeting. We, did, however get to meet one of the speech therapists as well as the two aides that Rebekah will have - one in the morning and one in the afternoon. So that was good. Then we met with the Special Education teacher and saw where her office is. Rebekah seemed to be "at home" at school.

Wednesday, Mommy and Sarah took Rebekah to school. We walked with her (and her AM aide) into the classroom. Sarah carried (or really she drug) Rebekah's backpack into the class while Rebekah brought her lunch bag. I asked Rebekah if she remembered where her cubby was and she slowly headed in that direction. Meanwhile, Sarah saw the cubby's and headed for them and started looking for Rebekah's name. I believe they are in alphabetical order and she started at the A's. Anyway, she walked all along (3/4 of the way) until she found Rebekah's name and put the backpack away. Just about then, Rebekah got there and put her lunch bag away. Mommy snapped a few pictures and then Sarah and Mommy headed out. Sarah broke down and didn't want to leave. It just about ripped Mommy's heart out listening to Sarah. Rebekah, on the other hand, seemed to do just fine.
Rebekah (at home) showing off her Hello Kitty lunch bag.

Rebekah and Sarah after getting out of the car at school.

Rebekah in her classroom (reaching for her nametag).

While Rebekah was in class, Mommy and Sarah ran a bunch of errands since Mommy didn't want to just sit at home and wait and think too much about Rebekah's first day. We made it home in time for Sarah to get a little bit of a nap before we needed to go pick Rebekah up from school. We picked her up and it sounded like the day went well... She did a good job of listening and paying attention and doing what the teacher asked. She was starting to get tired by the end of the day. She didn't eat much lunch - there were too many other things to watch and pay attention to, etc...

After school we went to speech therapy. We didn't have any idea how she would do with that. She ate some in the car on the way and took a short nap (10 minutes or so), so she wasn't totally hungry or totally exhausted. She did decent during speech. Could have been better and could have been a lot worse. We will have to see how it goes, but we may be able to keep going.

Thursday, today, Rebekah rode the bus to and from school. Rebekah has a different bus driver than she has had before, but someone we know (so that makes us feel a little better) and now she has a few other kids on the bus with her. Before, she was always on the bus by herself. She was excited to ride the bus. She fell asleep on the way home. Once she made it home, we headed into the bathroom. She noticed the bandaid on Sarah's knee and was telling Mommy that she needed a bandaid on the booboo on her knee too. I thought she was "being imaginative" until she took her pants off and I saw the booboo on her knee. So, after her potty break, with a great amount of "tired" tears we put a bandaid and medicine on her booboo and she got some tylenol to help with any pain.

Then it was time for both girls to take a nap. They were both very sensitive (crying at any little thing) and clearly tired. After a few "I need water", "I need a baby doll" needs met, they both fell asleep and took a good nap. That is a good thing since neither of them seem to have slept enough last night. Bedtime has been rough, too. We have to figure out how to get enough sleep - when do they need to go to bed and when/if they get a nap. Time will tell...

While Rebekah was at class, I took Sarah for her evaluation for special education. As far as Sarah was concerned, she was going to school and that made her happy. She did a good job of cooperating with the testing. Her biggest issue seemed to be her understandability. First, they looked at her articulation (her ability to make the different sounds). Then we moved on to her expressive language (vocabulary, sentence structure, plurals, "ing" on words, etc...) and her receptive language (her ability to understand what is being said). By the end, she was starting to get tired and only partially cooperating.

When her scores were calculated, her articulation was pretty poor - 1st percentile (99% of kids her age score better than she does). She definitely needs some help there. We didn't get to a cap on the expressive or receptive language. In order to find the cap, she has to get five questions in a row wrong. She was scoring in the 4 1/2 year old range and still only missing one or two here and there. That put her well above the curve - above average (or at least at the very top end of average) so we called it good. She was getting tired and she didn't need "help" in those areas.

So, to make the long story short, Sarah qualifies for special education for the articulation. The regional ESD office (where we did the testing) will send information over to the appropriate school and they will contact us to set up a meeting. Once that meeting has taken place, she will be able to start classes. Meanwhile, we wait and try to do so patiently. She will be at a different location than Rebekah - one that is closer to home, so I don't know the staff or the schedule.

They tested her hearing, again, and the left ear passed just fine but the right ear was questionable. Last time we had the same results, so we need to get her hearing tested. It may be nothing or she could have a hearing problem, so we need to have it tested. The ESD office has an Audiology department and we'll see what it will take to get in with them - they tend to run 6-8 weeks out. I may also check with insurance and see how and if they would pay for a screening. One more thing to add to my to do list.

Taking Sarah to do her evaluation, reminded me so much of when I was there with Rebekah. I was pregnant with Sarah at the time... It has been a while. Lots of emotions go along with that. Our family has been through so much since then... The evaluation team wanted to make sure that I knew that I could ask questions whenever and that I was part of the "team", etc... I told them that it wasn't a problem - I would speak up when needed.

Rebekah continues to be excited about school, so that is good. She is off until Monday (no classes on Fridays), so hopefully we can get her (as well as Sarah) caught up on sleep. Tonight was another rough bedtime. I have to imagine that many parents are going through similar things this week.

Please pray for all the kids with cancer. There are so many issues and concerns. They could all use some prayer.

Baby Lexie is home on hospice. Her parents are going through so much right now.

McKenna has finished her radiation treatment and is now back home. She will have more chemo. It wasn't an easy decision for her parents to make and they continue to pray that it is the right choice. When it comes to cancer treatment and decisions - they are never easy. Mommy got to meet McKenna and her family at Candlelighter's Family Camp last weekend. Daddy had met them a while back at the hospital. It was great to spend a little time with them!

Gage has some GVHD (graft vs. host disease) after his transplant and because of his immune system can't be around large crowds (like school). His parents are trying to keep him "busy" and entertained. I can only imagine what kind of challenge that must be. A couple of weeks ago, Mommy talked with Gage's mom on the phone and that was good to touch base.

Josh is starting his 2nd grade year with two big sisters away at college this year. He and his parents and two sisters (the ones not in college) were at Candlelighter's Family Camp. It was good to chat with them and catch up a little. Josh's mom has started her own blog, so check it out if you're interested.

Josiah's Grandpa died of cancer this week. That has to hit very hard. We met Josiah and his family last year at Candlelighter's camp. They weren't able to make it to camp this year. While we missed them, we were thinking of them - knowing that Grandpa wasn't doing very well.

Boey has been struggling with her chemo treatments. It has been rough for her family. They love their new home - thanks to Extreme Home Makeover.

Check out all the kiddo links on the right to see what is going on in all their lives. And please think of the families who lost kids this past year and have the new milestone of "first - first day of school" without their kiddo.

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